Tag: Sensory Processing Disorder

You may think it’s horrible to say this, but I wish my daughter had autism. BUT there is a very good reason for it.

I should clarify myself before I upset anyone whose life has been touched by autism. I wish my daughter, Paige, had a diagnosis of autism. She displays all the behaviors of autism, except one – she does not have social deficits.

WHAT DOES PAIGE DO THAT LOOKS LIKE AUTISM?

1. Paige has Sensory Processing Disorder (SPD). More often than not, children with autism have sensory challenges.

This poem was written by Darci Harig, who has SPD. Take a moment to read it and put yourself in her place.

My skin feels like it is on fire, tags poke at me like a hot wire.My pants are too loose, or way too tight…no matter what, they just don’t feel right.My shoes hurt my feet, I just can’t dealThe pain I feel is very real.Transitions are hard for me, structure and routine are a mustDisregulation and anxiety can lead to mistrust.What you may not know and what you may not seeIs that I am a child with SPD.Loud noises and chaos can really freak me out,Because of this, I too, may scream and shout.Sometimes I may hit, push, and run into things tooPlease know I am never really trying to hurt you.I may need to be alone, or have a quiet spaceIt helps me to feel calm and my mind not to race.Although we may learn differently, most of us are really quite smartLearning to understand my needs will help us to have a great start.What you may not know and what you may not seeIs that I am a child with SPD.Weighted blankets and compression vests help give me the input I needA few among the tools used to help me to succeed.I may have trouble sleeping and wake a lot with fearIt helps to know you love me and that you’re always near.Quite often I am misunderstood when I don’t behave like the othersThey think that I am naughty and, “not like my sisters and brothers”.What they do not know and what they do not seeIs that I am a child with SPD.Our senses give our brains directions on how to think and feelMy brain can’t read directions…my SPD is REAL.You all have a highway where all of your senses travelI have a traffic jam.. which leads me to unravel.I don’t need to be judged… or felt sorry forI am just like you ..although I struggle more.Please take the time today, to learn more about MEBecause I am more then my SPD.

My daughter’s sensory processing challenges are a mix of sensory-seeking (i.e. crashing into things) and sensory avoidance (i.e. not using the toilet at school because it flushes too loud). Perhaps the biggest struggle is that these things can change from day to day. Her sensory perception inconsistency produces a lot of fear and anxiety.

Sensory overload or sensory seeking behavior is the motivation for stimming.

My daughter constantly puts things in her mouth; other kids pretend to take a bite out of the toy sandwich, she shoves it in her mouth. (We give her gum constantly.) She scratches herself even when there isn’t a bug bite. Her stimming, just like her sensory processing, can change from day to day. She has gone through periods of whistling, snapping fingers, sniffing things excessively, licking (not just objects or us, but the cats too), and singing the same tune over and over.

For further information on stimming, please visit the above-mentioned Autism-help.org website.

3. Paige is prone to extreme meltdowns, wherein she cannot communicate what is wrong nor can we determine the reason. Children with autism have tantrums involving these same features.

Unless you are one of the few lucky parents, all children have tantrums. However, the duration, intensity, and reasons for children with autism may be different.

“So what,” you may say. “Get her some therapy and explain it to her teachers.

Here’s the problem:SPD isn’t listed in the Diagnostic Statistical Manual (DSM), which is the book of criteria for neurological illnesses.The medical field does not consider SPD a disorder in and of itself. This means Paige doesn’t qualify for THE EXACT SAME sensory therapy children with autism receive… all because she doesn’t have a label.

And because the medical community doesn’t think SPD warrants a DSM diagnosis, others do not recognize her challenges.

In fact, this blog was inspired by what happened last evening at my daughter’s school.

Paige’s class was about to perform a play. Paige did not want to go stand up on stage with her classmates and perform so I didn’t make her.

Because she doesn’t have stage fright, she has anxiety.

Real, true anxiety. As in, she-may-need-medication anxiety.

Anxiety is very common in SPD. Why? These children are anxious about the external world because their internal doesn’t function properly and, in Paige’s case, consistently.

My heart broke during her Thanksgiving Program last year, in 2014. She was absolutely PETRIFIED, rooted to the spot and unable to do the song’s accompanying hand motions and dance moves. I was miserable watching her.When she got off the stage and saw me, she burst into tears and cried until she had problems breathing. She didn’t want to stay for the “Thanksgiving Feast;” she wanted to leave immediately.

No way was I putting her through that again!! And what would be the point? I’d be miserable watching her be miserable.

And because of my decision, her teacher got angry. No, she didn’t yell or say anything rude – she just said OK in a tone that indicated it was anything but OK. Perhaps if Paige had a diagnosis, a label for these struggles, perhaps her teacher would have been more understanding. And that is the reason I wish I could get her a diagnosis of autism.

If this blog has touched you in any way, please rally the medical community to add this disorder to the DSM so children like my daughter can get the therapeutic help and social support they need.